Tremors post kidney transplant

@athenalee, Tacrolimus can cause tremors. They usually go away after body adjusts to the level of Tacrolimus that your body needs. It is different for each of us. When you say that you are starting to develop other neuropathy symptoms, does that indicate that your doctors thing there is something else going on besides tacrolimus side effects?

I hope you get some answers and some relief. I've got my fingers crossed that the tremors diminish while waiting for the appointment.

Thank you. My transplant doctor does believe it is related to Tacrolimus, but she is concerned about the rapid onset of severity and additional neuropathy symptoms. My Tac dosage was reduced by 1 mg and Mycophenolate doubled in February. I’ve not had labs since to see if my liver enzymes went up. But my symptoms have definitely increased markedly. She doesn’t want to switch me off Tac yet as I had to be taken off prednisone shortly after my transplant due to adverse reactions. So, she wants be to consult with a neurologist. I’ve also recently learned that PBC can also cause tremors. I did have occasional minor tremors starting around age 50...but never paid attention to them. So, presents another variable into the diagnosis. I’m hoping for answers from the neurologist, so we’ll see!

Thank you JK for your insights. I’m glad you no longer have tremors. They are certainly challenging in their impact on daily life. Cooking and writing are amongst my favorite and daily activities which are increasingly a challenge! I’m thinking I’ll have to switch off Tacrolimus, but it seems to be the best. Plus, the alternatives all have their own potential side effects and are unknown to my body! I never thought much about the aftermath of transplant surgery. So far it’s almost as challenging as pre-transplant...

@athenalee, Have you and your transplant doctors found any resolution for your tremors? I thought of you couple weeks ago when my labs were drawn and the results made me wonder if my Tacrolimus would be increased. Did you get to speak with the doctors? Do you know if the Tacrolimus or was the culprit in your situation?
And most important - How is the liver doing!

Thank you for asking. My liver is doing fine. Unfortunately the rest of me continues to slide rapidly down hill. Tremors are worse, muscle and joint pain is severe, my legs and feet have become numb, feet and hands tingle, fatigue, sharp nerve pains, oral ulcers, and more. I saw a neurologist last month who thinks I have Sjogren’s Syndrome, which the labs I took seem to suggest this. It’s another autoimmune disease that can be associated with PBC, which caused my liver cirrhosis. There’s no cure and I’ve found nothing on post transplant occurrences of it. I’m to see a rheumatologist and an oncologist-hematologist. The rapid onset is disconcerting and the whole ordeal very discouraging after having just gone through liver disease and transplant which I’d hoped was giving me a new happy life!

Athenalee, I was hoping that medication adjustment would be the solution for you. I can feel your disappointment and discouragement After seeing your response, I had to look up Sjogren's Syndrome, as I had always associated it with dry mouth and eyes. I also did not realize that it is commonly associated with PBC.
You are wise to seek medical diagnosis now, rather than putting it off. I hope that the rheumatologist and the oncologist-hematologist can provide some you with possible interventions to help you manage the symptoms. In the meantime, I hope and pray that you find some relief from what you are now suffering.

What has your liver transplant team had to say about the post-transplant occurrence of Sjogren's after your transplant for PBC? Do they suggest any additional liver monitoring? Will they be in contact with the specialists?

@athenalee, I'm sorry to hear about the additional complications and conditions. You may wish to share with others dealing with Sjogren's here:

- Sjogren’s Syndrome: Introduce yourself and meet others https://connect.mayoclinic.org/discussion/sjogrens/

Now that I’m researching Sjogren’s, I’ve found there are a lot more symptoms, including pain, neuropathy, a persistent dry cough (which I’ve actually had for years), and a number of other systemic issues. I did some searching Wednesday night for Sjogren’s experts in northern New England. I came up with a Dr. Bloch, whose with the Center for Immunology & Inflammatory Diseases at Mass General.

So, I put together a short medical history and some of my lab results and sent it off to him and another research lab at the Center. He actually called me! We discussed Sjogren’s for about a half hour and he ask me to send him my labs. I did, and he responded via email with a lengthy list of his additional observations and lab tests I should have, as well as other medical specialists I should see. It was such a thrill to have this fabulously nice and knowledgeable person who addressed the whole body system for a change to explain to me about Sjogren’s.

My liver doctors told me to see a neurologist sue to the symptoms, I haven’t discussed the Sjogren’s diagnosis with them. So, at least now I have a better understanding of what I face. There’s no cure, not a lot of MDs who’ve treated people with it, and no single treatment for the disease, just the different symptoms. So thank you for your concern and I’m still feeling down, but definitely encouraged by Dr. Bloch’s kindness.

Oh! You’re awesome. I didn’t know about the discussion. Thank you!

I’ve been having to change my tacrolimus dose frequently over the last few years. I’m almost 10 years out from my kidney transplant. Has anyone ever found out why the levels change? I’ve put on a little weight in the last year (stress eating - thanks pandemic!) and I would think my level would go down, but it’s been spiking high. I don’t have tremors when it’s high or any other symptom, but I used to in the earlier years.